Connect
← Return to Moyamoya treatment
Discussion
Brain & Nervous System | Last Active: 2 hours ago | Replies (15)
Comment receiving replies
@aforcucci
Hello Andrew,
I'm curious if you are still on this site? If so, I may be able to offer some ideas to help. I was diagnosed with Primary Moyamoya disease at age 28 in 1998 and had surgery that saved my life. I would be happy to share more to help if you are still on this site.
I wish you the best and hope you find the medical care that you need!
Valerie.
Replies to "@aforcucci Hello Andrew, I'm curious if you are still on this site? If so, I may..."
Connect
@valeriedawn
Good morning and happy Friday! I am still on the site and thank you for contacting me. Back in November of 2024, I had my bypass surgery (Mayo Clinic) on my left side. I had complications (donor arteries clotted, and seizures) during the surgery. The six hour surgery turned into 14 hours. Unfortunately I also had a post surgical infection while in rehab and required infectious disease admittance and treatment with 60 additional ICU days.
Unfortunately, this had me tied up in the hospital and rehab (speech, OT, PT) from November through February 2025. I received my titanium skull flap and had implantation surgery in April of 2026.
I just had my re-evaluation (this month) and angiogram and my right side of my brain is severely affected. I am waiting for my follow up from my neurosurgeon to decided if surgery is needed now, or if we continue our monitoring process.
I would greatly welcome any of your recommendations, ideas, anything that has helped you along the way. Again, I appreciate you making the connection and offering to provide insights.
I hope you have a great and safe remainder of your day and weekend. Thank you!
Very Respectfully,
Andrew Forcucci